Change Of Circumstances

To whom it may concern?

Once a week on a Sunday I have a lovely carer that is the sweetest lady. To be fair, most days my carers will ask how my week went/how my forthcoming week will be? And all my carers are lovely but specifically on Sundays. I tell her I can’t even remember. It’s this process, it comes flooding back. Monday, I had Botox for FREE. Because I had it in my leg, which doesn’t look younger. I had an inspection of the waterproofing on my balcony.

Tuesday, I saw the vampire, officially a phlebotomist for an upcoming appointment. I saw Young John twice to get me there and home again. I once would have just fanged it there on my scooter. But I digress, I went home, inhaled brunch, then out again for a massage.

Home again, smashed out a pasta bake one-handed. Managed to get it in the oven one-handed and sent an S.O.S. in the community chat to help me get it out again. Win! Sent some to a neighbours.

Wednesday, standard midday appointment, was not late. Coffees from favourite café, lunch to go, visit to bank to order new handy card, FFS!

A zoom that I missed with my car team, I received notes later. I have a new Support Coordinator she’s a gun. She’s already got help from her lawyer friends quoting the disability discrimination Act on the whole scooter and storage cage issue.

Thursday, had meeting in my car space with my overqualified handyman and my new OT, asked the most taped in community board member on the OC board to discuss the storage solution for a new scooter. This is actually starting to get some traction.

Apparently, apart from all the safety concerns of a mobility scooter catching fire in the communal space that is the garage. The who’s paying for the power on my scooter topic? Which has been discussed to death in a million ways. Apparently, the committee is largely concerned about the cage being UGLY – UM, can we go with secure and practical to give me back some independence? Then we’ll sort the not ugly. Apparently, the board is much more motivated to assist now the disability discrimination has been mentioned. I will still need to get a plan of the proposed storage cage past the committee, then have my S.C. (Support Coordinator) to lodge a “Change of circumstances” review request to the NDIA including the police report the OT started in 2025 with that was paid to do a job she only half did, did not do.

Friday, standard hunter/gathering day. Robbed everywhere I went, came home, put everything away, smashed out two blonde entre pizza’s, blond being the term for no red sauce. Then walked the short distance with a neighbour to a local bar for a shoe gaze night. Had chips and gravy, delicious. Home by 10pm. Finish chores, admin, bed around 2am.

Friday also received feedback from one place I frequent on my Anzac cookies that are next levelled twice. He thought his “Mate Helen” had shared them with him. I don’t know him well enough to be considered “mate!” had I been in the game right I could have created the side-hustle, I really need to provide 300 cookies for an event. I dropped the ball. Boo.

Saturday, with an assist from my carer, smashed out the steak and salad I normally have every Friday night, ate it Saturday night for dinner. Anyone wonder why I like to go off grid on the weekend?

Some wins and loses this week. To be sure, I now still need to do more waterproofing on my balcony. Also, I need to take my previous water proofers to VCAT since they did not solve the issue yet charged me $$$$$!

Right now, it’s Sunday night of a long weekend. Is anyone imagining a calmer week for Hellonwheels?

Not to mention, I need to rebuild a social profile on a tiny social platform. You know the one? That is a post for another day.

I also managed to put a giant band aid this week on the bullet wound that was all the nights I had tickets for comedy shows, I did not have a plus one, also a separate upcoming post. P.S. Love my comedy/concert friend from Ringworm.

Hot off the Press!

Sometimes, blogging about the here and now and the most important reason to blog gets lost in all the detail. So, being careful to consider someone else’s privacy.

Imagine being 29 and all you want to do is survive, to thrive, with a pre-diagnosed medical condition, you have a stroke!

Again, not my story, but a friend.

After over a month in hospital, being tested for everything including CoVid19 and with no answers. Sometimes, this is the way. No answers.

Being kept company by parents, day and night so nurses give the best care. The same care they would give to anybody without disabilities or pre-diagnosed medical conditions. No matter what they are. A short stint in in-patient rehab, where physio appointments went cancelled because of the low expectation of recovery. Parents needing to still be there to advocate for their child to make sure they get what they need.

What to do now?
Well, the hospital and the patient, to be fair want the patient discharged ASAP. The patient obviously very keen to be home where his parents can arrange the best for their child. Well, adult child and the parents could get a reasonable night’s sleep, to continue to love and care for their child as only parents can.

So, in a perfect world, a caring parent/advocate/carer applies to the NDIA for a change in circumstances, so the patient can go home. Extra carer hours can be utilised to provide adequate care in the home. Plus, some much needed respite for the parents. And sufficient physio and Occupational Therapy to return to at least the bare minimum or return to the same level of independence my friend had in the comfort of their wheelchair, not so very long ago. Is it too much to ask? Is it even possible? I guess we don’t know until my friend is in the best environment for this to happen. Which is clearly at home.

They can’t go home until these things can happen.

I don’t know about anybody else, but I don’t have the funds to pay for these kinds of things, so the NDIA, a government organisation should prioritise these things, no? Let’s see how long it takes for my friend to be able to go home.

And lastly, I’ll leave you with this great quote that I only know about because a great Aussie disability advocate used it.

Disability is seen this way………
“The soft prejudice of low expectation!”

Please share through your networks to show your support. While these stories go untold people get away with providing sub-standard care. Let no single person with a disability be left behind!